Wednesday, January 16, 2013

"Cerebral palsy life expectancy"

A lot of people who end up on my blog want to know how long a person with Cerebral Palsy lives. Some variant of this question directs them from Google to me and I see it in my statistics. I found it shocking at first and I wondered how to proceed. Should I have ignored it or acknowledged the issue in any way? I'm not used to talk of CP as simply a mobility issue, but a condition, am illness that adversely affects my lifespan. For me it has always meant that my legs and a hand is spastic meaning I can't stand or walk without assistance and things like balance or precision require more concentration. So, I've decided to do a little research of your own. If you trust Wikipedia you will learn that CP on it's own doesn't significantly alter life expectancy.  Of course the lack of movement, the fixed lifestyle based on either constant sitting or being bed ridden can lead to a number of conditions later in life, but it's not really caused by palsy. To be honest however, there are much more advanced forms of my disability that I could ever imagine and I wouldn't dare to comment on their quality of life. I've read about a CP blogger whose name now escapes me who was deaf and mute and not mobile at all who recently passed away. In his final entries he was talking about other young adults with this condition succumbed to some form of pneumonia. He was predicting his own fate as he was mentioning that they all went to a hospital with infections and never returned. So I've decided to Google some more. I've come across tables that claimed to be a product of late 2000's study correlating life expectancy with different forms of CP. What really stunned me looking at the divisions that they made is that I really don't see myself in there. They jump from "moves head, roll over" to "walks". I'm not sure if I'm reading the tables correctly, but if I was in the former, I should have been dead by 30. The latter is expected to live till 60. I don't walk, of course, but I do much more than just move my head and roll over. I move around in my chair and out of it, I  try to squeeze a bit of exercise, I go from one side of my city in my wheelchair and back daily. I did gain weight when I turned 30 and I don't like it, there is history of diabetes in my family and if I were to be honest, my dad was diagnosed to have a genetic heart condition my brother and I likely inherited. Those are some real concerns I have as I grow older. The website further indicates that one of the recommendations for extending the life of a person with CP is eating a lot of fiber. I choose not to discuss it further, but it shows how little people compiling that data know about me. I don't have any digestive problems at all. But then, I try to move around. If anything, texts like this make me feel like some kind of unicorn, as apparently I should not be as mobile as I am with my type of Cerebral Palsy. If it's true, I credit my parents hard work, years and years of rehabilitation, but also my own drive and determination I take after my mother.

1 comment:

  1. The daughter of my brother has this cerebral palsy and I want to know everything about it. This is my first time to read a blog about it and your article really impressed me. I enjoyed reading it and I want to see more new updates here. Thanks.

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